April 29, 2010

The Art of Healing

"Healing takes courage, and we all have courage, even if we have to dig a little to find it.”
-Tori Amos
Sing it sister! That is such a profound statement on so many levels for me. As Momma Odie would say, "I'm gonna dig a little deeper" (hats off to Disney, another masterpiece). Just having celebrated Easter and our Risen Savior last month makes me think of some mighty joyous healing. Jesus was battered, bruised, humiliated and betrayed. He had the power at any moment to stop the torture and say, I don't think so, I am the Messiah, oh, and I told you so, but he didn't. He suffered, died, and rose again for you and me; so we wouldn't have to carry all the burdens when we feel battered, bruised, humiliated and betrayed. And on that third day when Thomas put his fingers on the scars of Jesus' hands, Jesus had been healed. He had been to hell and back, literally, and was made new. Not to make light of the fact that our sins are forgiven in my rant here, I'm just digging deeper. Sometimes we have to go through "hell" and back to heal those wounds too. We need those scars as a reminder of the hard times and to guide us in the direction we need to go. We become far more the person we need to be, maybe even despite who we want to be. We can walk through the fire and live to tell the tale. Here's another one for ya, "that which doesn't kill us makes us stronger". I feel blessed that the Lord was able to guide me on "digging" a bit more out of the Easter message this year.

So we all have courage to do the very big and the small. It's just a matter of who will dig for it, or who will throw in the towel. Is it ever too late to heal? I don't think so. That would be like saying, sorry just don't want to grow anymore, I've reached my limit. Without the hurdles, how will we ever know our strength, how high, how far? If we don't climb the mountain, how will we ever see the beauty from atop? It won't be easy, but it is possible. And with possibility the sky is the limit!

April 20, 2010

It Is What It Is

It is what it is. That seems to be my mantra these days. I am so anxious this week. Waiting on word for school acceptance, waiting to hear about a job, waiting to hear about daycare, waiting for divorce papers. It seems with all this waiting and wondering and my life's path dictated by some of these unanswered questions, I am nervous. I want to control the outcome of these situations, but cannot. I know there is only one who really controls my destiny. So I try put my burdens on the Lord, and the only thing I can say is, it is what it is, and what will be will be.

It seems that where it is hardest to find acceptance, is with other's decisions or views. Why is it so very hard to accept another person’s viewpoint? Not that we even have to accept it, but perhaps listen and accept they have an opinion. If we all agreed to disagree, would the world be a better place. Hard to say. Passion has started wars and stopped them. Now I'm not talking about genocide, but just personal views. What might be best for our kids and how we choose to raise them, or the beliefs that guide our lives?

On one side, we may feel so strongly opposed to one's view that we take it personally, and then go for the jugular; hurting them with words or actions to make them feel some pain because we feel somewhat slighted by their actions. And, on the flip side, why do we have to be so politically correct all the time? It seems we are too PC sometimes. Without passion, without courage to say what "shouldn't" be said, no progress will ever be made. That very right to speak our mind is what makes this country so great. The human part seems to get us into trouble.

"Everything is determined, the beginning as well as the end, by forces over which we have no control. It is determined for the insect, as well as for the star. Human beings, vegetables, or cosmic dust, we all dance to a mysterious tune, intoned in the distance by an invisible piper" . ~ Albert Einstein

April 19, 2010

50th Post, and blah, coffee, blah, blah...

Wow, it's my 50th post. That's quite an achievement for me. I must say I have loved every minute of it from number one to now. And just an update for all of you who read, "Parents Beware" in the early days, I have an update on the play kitchen.  A four letter word, I'm barely able to type without feeling such immense joy...here it is...SOLD.  Anyway, back to the post at hand.  Blogging is such a cathartic experience for me. So I dedicate my 50th post to the grace that surrounds me and nourishes me, and of course, to coffee.

Coffee. I do love you. Caffeine, I wouldn't be here without you. I always love Saturdays because I treat myself to a Caribou. Oh the five dollar coffee is so worth it.

So this April, I have now made two trips to Children's Emergency Room. One for each precious child.  For my daughter a dramatic fall onto a chair arm, while jumping on the furniture. I quickly scanned her for broken bones, none, but I was not prepared for the blood. She did have a slight injury, but no stitches required; but scary none the less. And did she learn her lesson about jumping on the furniture you ask? Nope.  So naturally, the following sequence always follows, "Audrey, what happened last time you jumped on the furniture?"  Blah, blah, blabbetty, blah, blah.  She remembers alright, but it does not deter her, and I have turned into my mother.

Last night I took the boy into the E.R. for croup. It really snuck up on him and fast! He woke up with a slight fever but no other symptoms, by 2:00 a slight cough, and by 6:00 I knew he had croup. As rigid as Gabe is I knew it was going to be a long night, he hates having a stuffy nose, he freaks when he sees snot. I know great visual. Anyway about 10:00, the heavy breathing and screaming had kicked in and I knew the steamy shower was not going to get us through until morning when we could visit the ped. So the great thing about living in St. Paul is that we are only 5 minutes from Children's. It was packed! There had to be at least 5 broken hands/wrists, and a myriad of sickly looking babes laying in their mommy's arms.  The wait was an estimated 2 hours. The intake nurse took a listen and checked Gabe's oxygen level, and put us on the critical list! What, OMG. I'm glad I listened to my instinct. We saw a doc within 10 minutes. The doc heard Gabe coughing and said, yup, he has croup. The doc, the nurse and I then made a game plan. We were going to have to give Gabe a nebulizer treatment, which means a mask over the nose and mouth. I told them they were going to have to bring in the big gun, that’s right, Thomas the Train. So the video cart was wheeled in, popsicles waiting, and sticker rolls a-plenty. Still, it took the nurse and me to administer the neb, as he screamed the whole time. Next on the docket, two syringes full of steroids he had to take orally to shrink the swelling in his throat. Gabe doesn't do medicine. No matter how good, sweet, colorful it is he's a spitter. So I held him down and the nurse held his nose shut and slowly administered the meds. As heart wrenching as it was, it worked, not a drop leaked from his precious little mouth.

About a half an hour later, we were out of there, and Gabe is on the mend and doing well. We're skipping therapy for a couple of days to recoup. I wish we could be busier, because we're waiting for all sorts of news this week.  We are in process of waiting for the results of Gabe's most recent evaluation of his Autism. Not only is that nerve racking, but we are also waiting to see if he gets into the Autism Day Treatment Program for which we've been on the waiting list for about a year. Fingers crossed. We also found out he is number 12 on the second choice Autism Day Treatment program which would secure him a spot in the fall. The schools are both quite a far distance from where we live, so we will be moving relatively close to wherever we choose to send him in the fall. More to come when I hear the news.

Well there's an update since I've been MIA on the blog for awhile.

"Once you choose hope, anything's possible." -Christopher Reeve

April 12, 2010

10 Things Every Child with Autism Wish You Knew

Ten Things Every Child with Autism Wishes You Knew

By Ellen Notbohm

(© 2005, 2008)

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look "normal" but his behavior can be perplexing and downright difficult.

Autism was once thought an "incurable" disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism's most challenging characteristics. Equipping those around our children with simple understanding of autism's most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%…" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.

I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. Love me unconditionally. Banish thoughts like, "If he would just……" and "Why can't she….." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They may have had autism too.

The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead?

All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.

Three-time ForeWord Book of the Year finalist Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew and three other award-winning books on autism. She is a columnist for Autism Asperger's Digest and Children's Voice and a contributor to numerous publications and websites around the world. For reprint permission, book excerpts or to explore Ellen's work, please visit www.ellennotbohm.com .

April 08, 2010

Random Acts of Kindness

I was blessed by a complete stranger yesterday by a random act of kindness. I had to go to the Social Security Office, yes, collective groaning allowed, and this would be the 3rd branch in the Twin Cities I've graced with my presence in the last few weeks. To preface briefly, I need a replacement card, so I drove to the nearest location in Edina a while back. Got a sitter for the kids and all, thank you sister.  Upon entering the building I find a huge sign directing me to either the St. Paul or Minneapolis location? This would’ve been a useful post to include on the website before I drove down there. This week, I headed down to the St. Paul location, hum, another large sign, to Minneapolis. Again, why not on the website? Now, if there is one thing that I do not care for in this great state, it is driving in Minneapolis. Panic attack in full swing. I don't get it, can't maneuver it and I always get lost. Then there is always the parking situation to contend with too, and one wrong turn on Lake Street and I'm in trouble. St. Paul I can deal with, Minneapolis and I, we don't get along so well. So I log onto MapQuest (yes, I’m still old school like that, no I-anythings or GPS) and with my directions in hand, the kids and I head down to Minneapolis. I did get lost, darn one ways, but found my way to the office eventually, and luckily they had a parking lot! I enter the building and get my number from the kiosk directly, R33. The place was packed. They were on R194. After 200, the numbers start from one again. I ask the attendant approximately how long the wait might be and he says hour to hour and a half. Whoa, that was discouraging, but I had planned for that. I had just hoped at two o'clock in the afternoon it wouldn't be so busy. The kids were doing great and I'd filled my handy dandy diaper bag with lots of goodies healthy snacks and things to occupy their time. The man sitting next to us seemed very interested in the Thomas the Tank Engine book as we read, and commented on how many more times I might be reading that little gem in the next hour. I told him it didn't bother me, we didn't have anywhere to be and it gave me some time to just "sit" with my kids, without any other distraction. Ready for this? He pulled out his ticket, R5, and said, "here, take my number, I'll trade with you". Of course I said no, I couldn't possibly, but he insisted and hey, I wasn't going to talk him out of it before he changed his mind. Note, my cynical side briefly set in and I checked the ticket’s authenticity ever so carefully just to be sure. Tactfully mind you. I then shared with him how absolutely gracious he was, and how touched I was by his kindness. I also thanked him for showing my children genuine humanity and selflessness; that life lesson will speak volumes to their character. About 20 minutes later, R5 was called over the speaker; I gave him one last shot and he just said, "Go on".

What a blessing this man was to my family. I think in this world where faster is better and we’ve got no time to spare, it is such an enormous gift to give someone your time. That is a gift so precious to all. And he unselfishly gave a complete stranger and hour and a half. The human spirit just moves me. So often we are so cynical of people these days. And rightly so it would seem. After all isn't that what the nightly news teaches us? To be alert, code orange, be suspect, trust no one, be a watchdog.  And if you heap all the personal betrayal onto that, who stands a chance?  I love when the human spirit or Holy Spirit just breaks free and refuses to play by the earthly rules, the self-serving, sarcastic, skeptical rules. I like to think the right thing is that little voice in our head, the voice that you know you should trust, but it would make things harder, longer, and less easy. To be obedient to that voice, to God, to the Golden Rule is the hardest choice most often. That is putting God first and foremost, by following his commands and example. Well the way I’m talking this stranger up here, you’d have thought it was the Dalai Lama sitting by me or something. Just another reason we need to see more kindness in this world, and that only begins with us.

I gave that stranger, Mike, a hug when I left. Incredible day, amazing blessing, I'm looking to the future with anticipation at my chance to pay it forward.

"No kind action ever stops with itself. One kind action leads to another. Good example is followed. A single act of kindness throws out roots in all directions, and the roots spring up and make new trees. The greatest work that kindness does to others is that it makes them kind themselves."

-Amelia Earhart

April 07, 2010

Easter Aftermath

The elusive Easter basket grass...a shimmery staple in a basket of goodies, a tangled web between you and the fallen jelly bean, a continual pain in the back side to get rid of. Yes friends, Easter grass, the close cousin of Christmas tree tinsel rears its ugly head once again. The Easter grass must be having an affair with the dust bunnies, because it knows some great hiding spots. I cleaned and swept and mopped and vacuumed and thought I had got it all, but alas I toss off the flip flops and what is that stuck to my foot? How can this be? The biggest mystery is that we didn't even use Easter basket grass this year due in part to my loathing of it. It was last years strands stuck to the baskets. If placed under surveillance would it multiply? Yes, I think it would, and I'll go a step further and say it does! Well, at least there is still chocolate therapy to soothe my Easter aftermath woes.  So off I go to grab the vacuum attachments, I see a glimmer in the corner!

April 02, 2010

I Am Autism

Today is Autism Awareness Day!  I found a great article — this is written by Marty Murphy. He is an adult with Autism Spectrum Disorder who was born and raised in central Illinois.

I Am Autism

Hello. Allow me to introduce myself to you. My name is Autism. Perhaps you know me or know of me. I am a condition, a “disorder” that affects many people. I strike at will, when and where I want.

Unlike Downs Syndrome or other birth “defects,” I leave no marks on those I strike. In fact, I pride myself on the ability to infiltrate a childs life, while leaving him or her strikingly handsome. Many people may not even know that I am there. They blame the child for what I cause him or her to do.

I am Autism and I do as I please.

I am Autism. I strike boys and girls, infants and toddlers. I find my best victims to be boys around the age of 2, but any child will do. I like children and they are always the true victims, though I take hostage the others in the child’s family as well. It is a bit like getting two for the price of one. I affect one child and infect the entire family.

I am Autism. I strike rich and poor alike. The rich combat me with education and therapy. The poor shut their children away and cannot afford to fight me. I am able to win in the lives of poor children more than I am of the wealthy, but I will try to take root anywhere.

I am Autism. I am an equal opportunity disorder. I like whites, blacks, Mexicans, Ukrainians, Russians, Poles, Slavs, Japanese, Koreans and Fins. In fact, I strike everywhere on earth. I know no geographical bounds. I am Autism. I do not discriminate based upon religion either. I strike Jews and Christians, Muslims and Buddhists, Atheists and Agnostics, Hindus and Rastafarians. I do not care what religion a person is or what beliefs he may hold. When I strike, there will be little time for any of that anyway. When they find me, they will question everything the believe in, so why would I strike any one group? I have affected followers of every religion on the planet.

I am Autism and I am strong and getting stronger every year, every month, every day, every minute, and every second. I am concerned that money might be alloted to combat me and my takeover of children, but so far I have little to fear.

Some countries, like Kuwait, are spending quite a bit of money to assist those who I have targeted and some, like the United States, would rather spend money on such ludicrous things as discovering the number of American Indians who practice voodoo, as opposed to combating me. In an atmosphere as that, I can flourish and wreck havoc at will. In places such as that, I rub my hands with glee at the problem I can cause to children, families and to the society at large.

I am Autism. When I come, I come to stay. I take the dreams and hopes of every parent and trample them with glee. I see the fear and confusion in the eyes of my victims and I see the formation of wrinkles, worries and ulcers and the pain on the face of their parents. I see the embarrassment their child causes because of me and the parents unsuccessfull attempt to hide their child and, me. I see tears and the parents cry and feel the tears of their child.

I am Autism. I leave sorrow in my wake.

I am Autism. I taketh and give nothing but bewilderment and loathing in return. I take speech and learning, I take socialization and understanding. I take away “common sense” and if I am allowed to flourish, I take away all but their physical life. What I leave behind, is almost worse than death.

I am Autism. I fear nothing except courage, which I thankfully see little of. I fear those who take a stand against me and attempt to fight me and bring others into the fight as well. I fear those who try to make it safe and easier for my victims in the community, and their families. I fear those who push ahead, despite the fact that I am in tow. I fear the day that I will be eradicated from the planet. Yet, I do not fear too much right now. There is no need.

I am Autism and I bet you know me or know of me. If you don’t, you probably will soon. I am marching forward faster than I ever have before. I am looking for new children all the time. I dread the day I will be looked on with pity, or worse yet, understanding, for that day, is the day I will begin to die. But, I don’t think that will happen for a long long time though, do you? In the meantime, I prowl onward, looking to cause pain and suffering wherever I go. I have so much work to do and thankfully, no one is stopping me.

Hello my name is Autism. Perhaps you know me or know of me……………………………

written by: © Marty Murphy.